Multiple Sclerosis Foundation Internet Newsletter

"Multiple Sclerosis Foundation Internet Newsletter

We value your opinions!
Please let us know what you think of the MSFYi, this month's features, or send
ideas for future issues.

SEPTEMBER 2006 - MSFYi

'A few days ago I walked along the edge of the lake and was treated to the
crunch and rustle of leaves with each step I made. The acoustics of this season
are different and all sounds, no matter how hushed, are as crisp as autumn air.'
~ Eric Sloane

In This Issue
* MORE POSITIVE FINDINGS FOR FINGOLIMOD
* VITAMIN B3 AND NERVE DAMAGE
* HIGH-DOSE CHEMOTHERAPY FOR PROGRESSIVE MS
* NEED INFO ON WORKING WITH MS?
* GOOD NEWS FOR MSCoE - BUT WE'RE NOT THERE YET!
* FIGHT INFLAMMATION WITH CHERRIES!
* SATIVEX FILED IN EUROPE
* PROGRAM FOR CHILDREN WITH MS AND FAMILIES
* RELEVANCE OF CORD ATROPHY
* CATCH A TIGER BY THE TOE WITH MS KIDS CONNECTION
* ADAPTIVE SKIING SCHOLARSHIPS AVAILABLE!
* SOUTH FLORIDIANS: LET'S ROCK AROUND THE CLOCK!
* L.A. COUNTY OFFERS YOGA IN CHAIRS

MSF News
* MSF OFFERS QUALITY OF LIFE GRANTS TO MS CENTERS
* LAST CALL FOR BRIGHTER TOMORROW GRANT!
* NATIONAL MS EDUCATION & AWARENESS MONTH™ 2007!
* 2007 MSF CRUISE FOR A CAUSE TO ALASKA!



MORE POSITIVE FINDINGS FOR FINGOLIMOD
Fingolimod, an orally administered disease-modifying drug being studied in MS, was effective in preventing relapses in people with MS, according to preliminaryfindings by Swiss researchers. Results of this Phase II trial were published inthe September 14 issue of the New England Journal of Medicine.If the Phase III clinical trial is successful, a new once-daily oral medicationcould be available for the treatment of relapsing MS in approximately three tofour years, according to Dr. Ludwig Kappos, lead researcher and head of theoutpatient clinic for neurology/neurosurgery and MS Research Group at UniversityHospital in Basel, Switzerland.Treatment with fingolimod prevents lymphocytes from entering the central nervoussystem and attacking myelin.Data from a previous Phase II study showed a better than 50% reduction inrelapse rate in those with relapsing-remitting MS. A Phase III clinical trial isnow recruiting across Europe, Canada, and elsewhere.While these results are certainly promising, larger, long-term follow-up trialsare needed. Adverse effects include a transient reduction in heart rate afterthe first dose, shortness of breath, upper respiratory infections, headache andgastrointestinal problems.If you would like to see if you are eligible to participate in this clinicalresearch study, visit http://www.novartisclinicaltrials.com. Additional U.S.study centers will be added soon.

VITAMIN B3 AND NERVE DAMAGE Researchers from Children's Hospital in Boston, Massachusetts report thatVitamin B3 may protect people with MS from debilitating nerve damage. Tests revealed that mice with experimental autoimmune encephalitis, an MS-likedisease, experienced less weakness and paralysis if they received regularinjections of nicotinamide, a form of Vitamin B3.Lead researcher Shinjiro Kaneko believes the chemical protects againstprogressive nerve damage, which can cause fatigue, pain and behavioral changes.It is hoped that the study, which appears in the Journal of Neuroscience, willprompt further research and initiate a clinical trial. While current therapies for MS address the demyelination and inflammationassociated with the disease, they do not address the damage to the nerve fibers.SOURCE: The Journal of Neuroscience, 2006;26:00-00

HIGH-DOSE CHEMOTHERAPY FOR PROGRESSIVE MS According to a study by researchers at Stony Brook University in New York,high-dose chemotherapy has demonstrated significant potential in fighting theprogression of MS. Results appeared in the August 14 online edition of theAmerican Medical Association's Archives of Neurology and will appear in theprint publication in October.A group of patients with moderate to severe MS who were no longer responding tostandard therapy experienced improvements in quality of life and neurologicalfunction. After taking high-dose cyclophosphamide (HDC), they showed no signs ofadvancing disease. A team of physicians and specialists at Stony Brook managedthe intensive four-day course of therapy. For those whose disease progression cannot be controlled with standardmedications, the novel HDC therapy holds promise and should continue to bestudied, according to Douglas E. Gladstone, M.D., Assistant Professor ofHematology/Oncology in the Department of Medicine and lead investigator of thestudy.The therapy is based on HDC killing lymphocytes (white blood cells), whichtypically fight infections. But in MS and other autoimmune diseases, these cellsdestroy normal tissue, which can disrupt physical and neurological function.Researchers theorize that HDC gets rid of the abnormal lymphocytes and theperson's autoimmune disease is turned off or even potentially cured.To learn more, visit the Stony Brook University website athttp://commcgi.cc.stonybrook.edu/artman/publish/printer_1202.shtml.

NEED INFO ON WORKING WITH MS? The Accelerated Cure Project, a national non-profit organization dedicated tocuring MS by determining its cause, has a new educational booklet available fordownloading.Written by a professional coach for people with chronic illness, "Working withMultiple Sclerosis: Your Guide to Navigating the Workplace in a Healthy Way"offers many strategies and resources to help you deal with managing a career anda chronic illness at the same time.Just click here: http://www.acceleratedcure.org/downloads/acp-workingwithms.pdf.

GOOD NEWS FOR MSCoE - BUT WE'RE NOT THERE YET! Legislation to ensure federal funding for the MS Centers of Excellence (MSCoE)has passed the Senate unanimously! Thanks to everyone who supported thislegislation - but stay tuned because we aren't there yet. The House ofRepresentatives is now preparing similar legislation. In 2003, the Veterans Health Administration established two Centers ofExcellence for MS, the MSCoE-East in Baltimore and the MSCoE-West in Seattle andPortland. Both centers are establishing and expanding networks of MS specialiststo enhance the care of MS patients within the VA system. The mission of the MSCoE is to provide a resource for healthcare providers,patients and caregivers through a specialized and collaborative integration ofclinical care, training and education, research and development, informatics andtelemedicine. The goal is to establish a national "hub and spoke" system toidentify and support local specialists to optimize the care of all MS patients.To learn more about the MSCoE, visit http://www.va.gov/ms.

FIGHT INFLAMMATION WITH CHERRIES! Good news for cherry-lovers! In a U.S. Department of Agriculture study,researchers found that anthocyanins, the red pigment in Bing cherries, helps toreduce the pain and inflammation associated with arthritis and other diseases. Cherries have many other health benefits as well. Cherries are a great source ofpotassium and Vitamin C and low in fat and sodium. They are a potent source ofantioxidants, with high levels of melatonin, which has also been shown to beimportant for the function of the immune system. Cherries are also rich infiber, which can help with the constipation associated with MS. While Bing cherries are probably the most famous of the sweet varieties, thereare more than 1,000 kinds of sweet cherries. Bing cherries are a dark red orburgundy color. There also are light sweet cherry varieties, such as Rainier andQueen Anne.So, whatever you eat next, put a cherry on top!

SATIVEX FILED IN EUROPE After a delay of about two years, Sativex, the cannabis-derived drug developedby GW Pharmaceuticals, could finally gain approval. In December 2004, the Medicines and Healthcare Products Regulatory Agencyrejected the drug, requiring a second clinical trial to prove its efficacy,which the company has now conducted with positive findings.Currently seeking approval to treat MS spasticity, the company hopes toeventually gain approval to also treat peripheral neuropathic pain, MSneuropathic pain and cancer pain.GW Pharmaceuticals has filed for approval of Sativex in four European countries- the UK, Denmark, Spain and the Netherlands. Besides filing as a treatment for MS spasticity, the Phase III clinical trialscontinue and will provide further data to support additional regulatory filingsfor separate indications. Sativex is already approved in Canada to treat MS neuropathic pain. The companyrecently started an additional Phase III study, which will complement existingPhase III trial data. Based on these results a filing in Europe is expected bythe first half of 2008.

PROGRAM FOR CHILDREN WITH MS AND FAMILIES The MS Society of Canada and the National MS Society recently launched YoungPersons With MS: A Network for Families With a Child or Teen With MS. This is acollaborative program to provide support to young people with MS and theirfamilies.Educational resources provided by the network will educate children and parentsabout the disease, along with ways to manage symptoms and adapt to changesbrought by MS. Kids Get MS Too, a handbook written for parents by pediatric MSspecialists, offers a wide variety of information. Mighty Special Kids is anactivity book with educational games, age-appropriate articles, and activitiesfor children with MS between the ages of 5 and 12.To learn more, call toll-free 866-KIDS-W-MS (866-543-7967) or 800-FIGHT-MS(800-344-4867). You may also send an email query to childhoodms@nmss.org.

RELEVANCE OF CORD ATROPHYPrimary Progressive MS (PPMS) is a mysterious sub-type of MS. None of thetreatments that help those with relapsing remitting MS (RRMS) seems to helpthose with PPMS. A study used MRI to look at brain and spinal cord atrophy inearly stage RRMS, PPMS, and healthy controls. While gray and white matteratrophy was present in all MS subjects, only those with early PPMS showed spinalcord atrophy. At the time of their MS diagnosis, 15% of people will fall into a PPMS category,while 85% will have RRMS. Those with PPMS tend to have an older age of onset anda higher proportion of males than those with a RRMS onset. In those with PPMS,the mechanisms of disability are not well understood. These individuals tend tobecome disabled at an earlier stage in spite of having no greater load oflesions on brain MRI. Rather than having relapses, those with PPMS tend to showslow progression of disability, primarily gait impairment. Those with PPMS tend to have most of their demyelination in the spinal cord.This tissue loss in the spinal cord, or atrophy, occurs early in PPMS and ishighly correlated with disability. However, measuring cord atrophy in a clinicalsetting remains challenging. MRI is used, but there are issues of consistencydue to cord diameter, body size, etc.

CATCH A TIGER BY THE TOE WITH MS KIDS CONNECTIONMS Kids Connection is a one-year-old organization founded by Kim Russo and her16-year-old daughter, Brandhi, who was diagnosed with MS at the age of 13. MS Kids Connection was founded to connect kids, their families and theircommunities for knowledge, understanding, and most importantly, strength.Now, the MS Kids Connection is excited to announce the launching of their HopeOutreach Program. This program is for all kids affected by MS - kids and teenswith MS and kids and teens that have a parent or sibling with the disease."When a child or teenager is diagnosed with MS and they contact us, we'll sendthem an adorable stuffed tiger, designed especially for this program, to providecomfort and a few words of encouragement," Kim explains.The MS Kids Connection is seeking individuals who would like to adopt a tiger.Hope's adoption fee is $25.00. After Hope is adopted, she is sent out right awayto the next child or teenager on the list."Our needs are two-fold," Kim says. "We need people willing to adopt Hope and weneed the names of kids who need hope. The adoption fee pays for the tiger, alongwith packaging and shipping, and the remainder goes toward continuing theprogram." So, whether you want Hope or need hope, whether you are a kid with MS or theparent, friend, or sibling of a loved one with MS, please contact MS KidsConnection at 1-866-730-9356. Or visit http://www.mskidsconnection.com.

ADAPTIVE SKIING SCHOLARSHIPS AVAILABLE! Are you seeking the adventure of a lifetime? The Adaptive Sports Association (ASA), a non-profit, year-round sports andrecreational organization dedicated to enhancing the well being of people withdisabilities, is now offering the New Dimensions Scholarship for a snow-skiingprogram in Durango, Colorado. Scholarship winners will receive a trip to Durango to learn to snow ski!Round-trip transportation, five-nights lodging with Durango area host homes,most meals, accessible ground transportation, four days of adaptive skiinstruction, lift tickets, equipment and private instruction are included! Now,thanks to a grant from MSF, ASA hopes to work with even more individuals withMS.The ASA has been serving people with physical and cognitive disabilities forover 20 years, helping them to enjoy sports and other outdoor recreationalactivities. ASA instructors provide a safe environment utilizingstate-of-the-art adaptive sports equipment.For more information or to apply for a New Dimensions Scholarship, please callthe ASA at 970-259-0374. Or visit http://www.asadurango.org/scholarships.html#newdimensions.

SOUTH FLORIDIANS: LET'S ROCK AROUND THE CLOCK!If you'd like to enjoy a fun-filled evening of entertainment and also supportthe MSF, here's an event you don't want to miss. KP Productions invites you topull on your poodle skirt or leather jacket and round up your friends and familyfor a full-scale musical production of PINK! The talented cast, under the direction of Karen Pritchard who was diagnosed withMS in 2001, will feature feel-good tunes from the early 1950s that will have yourocking around the clock!This musical extravaganza will be held at the accessible Crest Theatre in DelrayBeach, Florida on Wednesday, November 1st through Sunday, November 5th. Matineeand evening performances, as well as group discounts are available. So mark yourcalendars today for a great evening for a great cause! Tickets range from$25-$35. To learn more, call Karen at 954-426-3525 or visithttp://www.KPProductions.org.

L.A. COUNTY OFFERS YOGA IN CHAIRS If you live in the Redondo Beach area, a series of eight yoga classes areavailable for you and your carepartner - at no cost. Registered yoga teacher,Via Page will help participants increase flexibility, strength and balance whileusing the breath, movement and meditation to reduce stress and increase thebody-mind-spirit connection. Classes meet from September 28th through November30th. To learn more, contact Via at 310-483-5154 or send an email to via_page@yahoo.com.

MSF NEWSMSF OFFERS QUALITY OF LIFE GRANTS TO MS CENTERS The MSF Quality of Life Grant Program provides financial assistance to MScenters to expand their current programs and services. MS centers that qualifywill be enabled to provide more patients with diagnostic and rehabilitationservices, support and social services, education and outreach, and medical care. The ultimate beneficiary of this program will be the individual with MS whorelies on the MS center for comprehensive treatment, professional resources,support, education, and information on the latest research advances.Further information about The MSF Quality of Life Grant Program and applicationguidelines can be found on the MSF website at http://www.msfocus.org/programs_grants_mscqol.php. The deadline is December 1st.

LAST CALL FOR BRIGHTER TOMORROW GRANT! Each year, the MSF makes dreams come true for individuals with MS across thecountry through the Brighter Tomorrow Grant Program. The goal of this program isto provide individuals with MS with goods or services to improve their qualityof life by enhancing safety, self-sufficiency, comfort, or well-being.Applications must be postmarked/time stamped on or before 10/1/06. For complete information and applications, which can be submitted online, visithttp://www.msfocus.org/programs_grants_bwmg.php. Additional applications can beobtained by calling 1-888-MSFOCUS (673-6287).

NATIONAL MS EDUCATION & AWARENESS MONTH™ 2007!Planning is underway for the 5th annual National MS Education & Awareness Month.There are so many ways that you, your friends, family members, and MS supportgroups can help! Our theme this year is Lights, Camera, Action! As always, we will spotlight MS and raise awareness of the disease via ourinformative MS Awareness Kits, regional events, national teleconferences, andwebchats. Stay tuned for details. A photo initiative is planned - so get thosecameras ready! We also encourage you to take action during the month by planninga fundraiser, special event, or educational program in your community.If you need help getting started, call our Community Relations Department at800-225-6495. We will be happy to help you plan anything from a simpledress-down day at the office, to an educational presentation or program to agala event.This is your month - let's make it a blockbuster!

2007 MSF CRUISE FOR A CAUSE TO ALASKA! The MSF Cruise for a Cause offers innovative, educational programs at sea forindividuals with MS. This fun-filled adventure provides an opportunity to learnfrom renowned MS specialists, forge friendships with others with MS, and enjoyan infinite number of amenities, all aboard a luxury cruise ship!This year, we will follow the Inside Passage from Seattle, Washington toSkagway, Alaska - 500 miles of crisp, clean air and unparalleled naturalwonders!Don't miss this seven-night adventure, from June 8th through the 15th, aboardRoyal Caribbean's Vision of the Seas. Ports of call include Juneau, Skagway,Tracy Arm Fjord, Prince Rupert, British Columbia, and Seattle, Washington! Passports required! For more information call Fun Cruise & Travel toll-free at888-826-9660, or visit http://www.funcruiseandtravel.com/msf2.htm.

*******************************************************Editor's Note: The intent of this newsletter is to provide information onvarious medical conditions, medications, treatments, and procedures for yourpersonal knowledge and to keep you informed of current health-related issues. Itis not intended to be complete or exhaustive, nor is it a substitute for theadvice of your physician. Should you or your family members have any specificmedical problem, seek medical care promptly. For questions regarding this publication, email http://by107fd.bay107.hotmail.msn.com/cgi-bin/compose?curmbox=00000000-0000-0000-0000-000000000001&a=3d3d9c5eb0e7da2994d33e94846f91e9b6812351d3ac91e876c1c7908c96906c&mailto=1&to=editor@msfocus.org&msg=D6496F09-E28A-4FAB-B462-A92200991793&start=0&len=20747&src=&type=x.